A few of my friends have asked me how my family has been during the COVID-19 crisis. My typical response is, “His Grace is sufficient. We are marvelously helped" (2 Corinthians 12:9, 2 Chronicles 26:15). This is my standard, faith-based response, no matter the challenge we may be experiencing at home that day. As the mother of a child with sensitive medical needs, my life is pretty much the same it was before the pandemic — times the stress on 1000.
The truth is, hand sanitizing, wiping down surfaces, and avoiding places where sickness and disease abound is how my family lives every day. Every flue season, our home systems shift into what people are now referring to as physical distancing and quarantine because our son is still in recovery from bronchopulmonary dysplasia. When we fail to follow a strict protocol, we end up in the ICU (which has happened both flue seasons since Emmanuel came home).
Being the mother of a child with extremely complex needs, I do not walk into rooms expecting people to understand what I live and deal with daily. However, the one place I draw the line is when people who know nothing about caring for a loved one with unique, developmental, or medical needs interject themselves or place additional burdens on my plate. Even worse, is when people try to generalize or compare struggles as if to suggest they know what it means to carry the load my husband and I carry on a daily basis.
To help us all as we deal with the pandemic, here are some ways friends and family can be supportive and sensitive to those dealing with illnesses or special needs during this time:
1. Offer support, minimize advice you can’t help carry out
There are so many ways to support families in need. Whether it is sharing a resource, ordering groceries, or sending an item that can better help them care for their loved one. What is not helpful is saying “You should...”, because unless you have an identical experience (which no one does), you don’t know what mental or emotional capacity the person you are offering advice may have while caring for a loved one with a potentially catastrophic illness.
2. Don’t pretend to know and understand what you don't
No matter what you think you can imagine, don’t. It's better to ask questions and allow individuals to offer up information, rather than trying to assume a lived experience you know nothing about.
3. Send encouraging messages
When my son was hospitalized, the people I gravitated towards the most were those who had encouraging words or positive energy. When your plate is full, the last thing you want is to spend time around energy vampires, also known as people who only make withdrawals from your life, but very few deposits. Begin to ask yourself how you can be a positive contributor to those in need, rather than making demands on their time and attention.
4. Do not overstep personal boundaries
We all have varying levels of comfort and intimacy. Some people love company when they experience challenges, and others may prefer peace and quiet. It is better to ask the individual you care to support which way you can appropriately lend a hand rather than overstepping a boundary and causing more harm than good.
5. Practice compassion
Compassion can be hard when you haven’t lived an experience. In my current circumstance, I find it very difficult to empathize with those facing what I perceive to be lesser challenges. Still, I try to take myself to simpler times in life, when planning a shower or wedding was a big deal, or getting into a fender bender seemed like the end of the world.
It takes me some time to go back to that place, but I find it helps if I suspend judgment just long enough to listen and, more importantly, not ruin a relationship.
Even if you have not been a caregiver, wondering how you might respond if something tragic happened to someone you deeply love is a good way to take stock and perspective as to what might be the highest level of priority for the person you are trying to support.
Maslow’s Hierarchy of Needs says we all have five levels of need:
Without achieving the basic physiological, safety, and social needs, it gets very challenging to meet the others. The best way to support loved ones going through a difficult time is to seek to meet or find ways to share information that might help them meet the need the basic needs of food, safety, shelter, health, and stability. Anything beyond that is ambitious in the midst of a crisis.
Growing up with a brother diagnosed with autism, I understood firsthand the potential impact caregiving could have on an entire family. One thing I wished back then was that those who did not live the experience would reserve their opinions. More often than not, I appreciate hearing from other moms with similar lived experiences or those who understand systems and processes in a way that might benefit my family. Random feedback is rarely helpful.
All in all, if being helpful is not something you can offer, then be silent or supportive. A listening ear and shoulder to cry on always helps.
Did any of this resonate with you? Comment below or share it with a friend.